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Monday, January 30, 2012

Facebook has been rolling out its new Timeline format for a quite a while. Two days ago, I decided to take the plunge and create my new page. Ah, but what picture should I choose? I settled on the live conference painting: Bridging the Great Divide from Health 2.0 October 2010 in San Francisco hosted by Matthew Holt and Indu Subaiya.

Upon posting the painting as the “cover” of my page, friends asked to see the explanation of the piece. To my dismay there wasn't a post. Health 2.0 had been hosting a video of my explanation on their site but it was no longer available. It was time to explain Bridging the Great Divide.

(***Thankfully soon after posting this Ramin Bastani came to the rescue.*** He uploaded his I-phone recording of the speech in its entirety. Thank you so much Ramin!!!! So I am inserting the speech into the blog.)

(The speech is transcribed below, the blog explanation is in smal type font.)

"I love Health2.0. I just love it. I mean you should clap for yourselves; you are amazing. I go to a lot of medical conferences; I go to a lot of patient centered conferences. I go to a lot of government conferences, I testify, but what I love about Health 2.0 is you folks don’t sit down. You stand back there constantly researching and tweeting, talking and kibitzing and trying to figure out how to make data work and it is beautiful. That is what innovation is all about. You refuse to sit still. It is astounding and it is beautiful. When Health 2.0 Goes to Washington happened I was amazed. You could tell the gov. folks opposed to the Health 2.0 folks because the people seated in the plush seats oftentimes were governmental. So you are a very amazing crowd.I have been listening to you for three days and as I have listened to you I created a painting. That painting is called “Bridging the Great Divide. “ Because a lot of what we are talking about is how do we communicate? How do we bridge communities? How do we take left-brain thinking and right-brain thinking and combine them?

So as you look at the piece you will actually see there are two brains. We have our right brain our very emotional, creative and artistic side. And that brain is basically a tree of knowledge. The tree of knowledge has an apple and that apple also is an eye, because knowledge must have vision. It doesn’t go anywhere if you cannot see what you are supposed to be doing."

(The left side offers a vignette story of Diem Brown and her company MedGift. Diem was one of the presenters that week and I painted her sadness.Diem was only 23 when she was diagnosed with ovarian cancer.She found herself adrift with no one to ask for help.Wedding announcements and baby shower invitations from here friends were arriving in the mail, while Diem was struggling to pay for chemotherapy wigs and to arrange drivers to her various medical appointments.She thought, “Why is this so hard?Why isn’t there a registry for cancer sufferers like those that exist for brides?”Due to Diem’s valiant effort such registry now exists, and it is called MedGift.)

And then I don’t know if anybody heard the presentation about creating a cancer gift registry. It was an incredibly powerful concept. Which is take the most wonderful day in your life: the day you got married, that day you were in that bridal gown and it was so beautiful and combine that with day you found out you had cancer, and your hair was falling out and you cannot pay your medical bills. How do you get people to help you? That’s brilliant; let’s create a gift registry for those people, because those people need those gifts so very, very badly. They need so much help. So I combined it into a painting. (Applause) Yes, isn’t it beautiful and tragic?

So if you look at this we also have the coyote. As Jeff Goldsmith started this whole thing saying his animal spirit is the coyote, but I put it in sheep’s clothing. Because you do not look at Jeff and think initially he is as powerful as he is. But then it is like, “Wow, this man is disruptive.” And you know, that is the kind of inside disruptive that changes things.

Then as you look at this there is a classic radio tower putting out waves and waves of data, beautiful circular waves of data that are going everywhere. It encompasses all of us. Also this looks like starry night, this looks The Scream –I got a lot of that. It also addresses mental illness because under the under current of a lot of these conversations was that people are sad they are not taking their drugs, they are not compliant, they are depressed and how are we addressing mental illness within data access?

As we look at our bridge and it is San Francisco, the beautiful bridge, you know bridging areas bridging geographic regions. So we have actually all those wonderful dates that we were talking about. When was the CAT scan developed? When was the MRI? When was the x-ray developed? When was Gorilla Glass developed? Do you know what Gorilla Glass is? That is the covering tiny micro-thin glass on your droid and it might be on your I-pad they are not going to tell us. It was sitting in a vault in Corning Ware since 1962 waiting for technology to catch up. And that is what you guys are doing right now. You’re the catch up. All of these amazing things are out there that you need embrace and teach us how to use correctly.

So we have a little baby and you know what that baby is doing? That baby is crossing what is called the visual cliff. Can you walk on glass? Can you take a step forward when you don’t know what is supporting you? Do you have faith in the technology that you are speaking about even if you cannot see it nor prove it nor say that it is currently effective? Can you convince others about how it is going to change absolutely everything?

So this mobile device has sacrificed its glass so a baby can cross, but it is still doing its job. It is going downward. It’s letting go of its circuit board and it is becoming a life raft for all us that at home online, researching trying to get help for our diseases. That mobile device, mobile technology is going to change everything because those of us who are swimming in waters that we don’t know how to get out of, it’s saving us. Those people in our society that are the most underprivileged, inaccessible to care, you know what they have? They have a cell phone, and they are texting and you can reach them. You can communicate with them, and bring them to be part of this and get rid of this great divide.

Then as we go deeper in, does anyone have arachnophobia: fear of spiders? Okay, there is a spider motif within this painting. As you notice the bridge becomes a web, over here we have a black widow concept. The black widow is a web spider; she waits for her prey. She waits for it to come and for many, many years that is why we called it the web. It just sits there, it does not go out and find people, and we just wait for them to find us. We have to change that. That is part of what innovation is.

Over here we have a gentle man who is actually a brown recluse. They are called fiddle backs. They are hunter spiders. You don’t hear them coming and they are coming, and they are going to get you if you do not watch out. One of the things is watch out. Things are changing; embrace the innovation that is coming.

But also we heard some amazing things about sex in the last couple of days. So we have our qupid.me device and a beautiful woman without a face. Showing you what he has for you. And that is a lot of what we do with those mobile apps. How can we communicate, how can we bring her into this communication.

(The babe is trying to reach for a beautiful woman without a face. She in part represents the story that Ramin Bastani founder of Qpid.me told at the event. He was part of the unmentionables session. His service provides texts detailing a list of current STD’s or the lack thereof within a 12 month window. He called it with boyish good humor "a modern, flirtatious, I'll show you mine, if you show me yours." She beckons with her heart in her hand as if to say: “Here know all there is to know of me and see if you love me still.”)

As we go deeper in, I heard a lot about privacy. So I have this apple peeling around Deborah Peel. And she has got a statue of Liberty and it is off it is smoking. The light is dead. And she is holding a lock instead of a book. That is what privacy is about; it is about closing down information and making it not accessible to us.

(Deborah Peel symbolizes the many conversations about the importance of privacy in health. But privacy over knowledge is not desired by all. Many of us want know about our health and share that information with others. )

Then we have a brain on the other side, the analytical side. I have been hearing a lot of ROI, ROI… You know it is more than that. Return on Investment is a nice thing, yes, but we are talking about saving people’s lives. I heard a decent amount about pills too, about pharma. And how are we going to make sure people are medically compliant and take their drugs.

I do want you to look at this there is not a hell of a lot about medicine in this painting. And there is not a lot about patients. There was a lot of talk about innovation and data and access, but we are not necessarily talking about where that is taking us and how are we going to help people. I want you to think about that really strongly.

Because the reason we are doing all of this is to help those patients, to help those people, to make this time in their lives that is absolutely the absolute worst time in their lives better.

(This painting was purchased by Ron Gutman founder and CEO ofHealth Tap during the auction at the Health 2.0 event in October 2010 and post about it can be viewed on their site called Bridging the Great Divide. The post explains the intent of the piece that we must bridge the right and left brain thought. We must use the tools of technology to save lives. I hope every day he and his team are inspired by it upon their wall as I will be inspired viewing it on mine.)

Let me not to the marriage of true minds
Admit impediments. Love is not love
Which alters when it alteration finds,
Or bends with the remover to remove:
O no! It is an ever-fixed mark
That looks on tempests and is never shaken;
It is the star to every wandering bark,
Whose worth's unknown, although his height be taken.
Love's not Time's fool, though rosy lips and cheeks
Within his bending sickle's compass come:
Love alters not with his brief hours and weeks,
But bears it out even to the edge of doom.
If this be error and upon me proved,
I never writ, nor no man ever loved.

A few months ago I spoke to Ross Martin at an ONC event. Ross has a background in medicine and was an OBGYN before devoting himself to healthcare policy. He sat a conference table with a pile of paperwork before him. Although his shirtsleeves were rolled up, he still looked professional in his dress shirt with matching tie.

We were both very tired from a long day. I had painted two jackets and delivered a keynote. He had been there as a representative of Deloitte and just finished his final meeting of the day. I knew of Ross, although I did not know him personally. I had seen his HITECH: An Interoperetta in Three Acts and The Meaningful Yoose Rap. I was so excited to see another artist address the intricacies of Health Information Technology within their chosen medium. I asked him that day if he would write a song for our upcoming healthcare data-sharing puppet show at Health 2.0: “The Rainbow Button Initiative.” He said he would. I also asked him to join The Walking Gallery. He said he would do that as well.

Then he began to tell me the story of how he met his wife Kym. In 1999, Ross was attending his first Ballroom dance competition. He did very well. Then he met this lovely woman with a long and gracious neck, a dancer’s neck. He wanted to dance with her that night. He taught her quite a few of the slower dances and they talked till 2:00 am. Kym told Ross so many things that night. She told him of her challenging childhood and of her diagnosis of a type of cancer called Hodgkin’s Lymphoma at the age of 17. Kym explained that due to the impact of her cancer treatment, there was no way to know if she was rendered sterile and that if she did conceive, she faced a higher potential risk of developing melanoma. She told him everything and stripped all the protections away from her soul letting Ross see her in all her tragic beauty.

After the “Ball,” Ross began to court Kym. Both had been in prior failed marriages. At first they were timid in their love; as a heart is want to do once it suffers a burn. But after several dates and six weeks of courtship, Ross asked Kym to marry him. She said yes. They did not set a date, instead deciding to enjoy a long engagement.

Then the tempest struck and they were sent spiraling. A routine test led to a diagnosis of a return of Kym’s cancer. Ross and Kym began the process of additional tests and went to see several specialists. Ross had many contacts in the medical community and they went to the best doctors in the field. It was 1999 and the internet was only taking its first steps toward medical transparency. But even then, one could find out that a reoccurrence of Hodgkin’s Lymphoma was dire news.

After two weeks of appointments, additional tests costing over $10,000 and spending those timeless days in the waiting place, Ross and Kym were told that most likely the cancer had not returned. The doctor told them an image had been overzealously read. It was scar tissue, not cancer. The facility had no access to Kym’s older films from years before. If a HIE (Health Information Exchange) had been in place and such files had been stored and transmitted, Ross and Kym would not have spent two weeks in torment in the waiting place wondering if a death sentence loomed above them.

With this reprieve fresh in their minds, Ross and Kym decided the time for waiting was over. Two months later they married on the beach in Hawaii. It was beautiful and magical, and was soon followed by more joyful news. Kym and Ross realized that Kym had conceived a child on their wedding night. Nine months later their son Taylor was born.

So I painted this jacket for Ross “Love is an ever-fixed mark.”

I was inspired by Ross’s story and Shakespeare’s sonnet. I saw their love as a lighthouse on the beach, and ever-fixed mark. They are a fixed a moment in time, a moment of love eternal. Hodgkin’s Lymphoma cells float across the sky, as they dance.

But a marriage of two minds should have two jackets, so I also painted a jacket for Kym: ”Knowing the Score.”

In this jacket a lovely Kym looks upon the viewer. Her long neck is beautifully displayed and if you are familiar with the disastrous effects of Hodgkin’s Lymphoma you know what can happen to such beautiful necks. This is a disease of the lymphatic system. The lymphatic system is a network of conduits that spread throughout the entire body ending in nodes. Nodes are found in many places but are very prominent in the neck. Painless swelling of lymph nodes is a very important symptom in this type of cancer. If left unchecked, this disease spreads throughout the body and leaves a disfigured mound of flesh in place of a graceful neck. I also chose to depict the lymphatic system as a networked series of circuits. That network spreads throughout Kym’s body and connects with the code behind her.

Ross is playing on his guitar and as his fingers strum the chords a stream of code descends. Ross is doing everything, and I do mean everything, he can to promote positive change in the world of healthcare. He will wear a suit and head to meeting after meeting to promote a better understanding of HITECH, EMR’s and data sharing. In his free time, he will write about it, sing about it and create videos to elucidate the topic.

Behind them both is a Dr. Seuss sky. “Oh the Places You’ll Go!” is a favorite book of Kym’s. I thought that telling. It is book that warns us that many people get stuck in the waiting place of indecision. It is a book given at graduations, but it is also a book about confronting death. You see Ross and Kym made a choice. They decided to stop waiting. They decided to live and love and do everything in their power to help others do the same.

Friday, January 20, 2012

The lobby in my building is under renovation. It was pretty to begin with, but the management of the building has decided to make it glorious. Now, when a friend comes see me or a potential tenant waits within the lobby they are surrounded by beauty, comfort and welcome. The management of my building understands that first impressions are important and affect the entire experience.

Design matters. Words matter. The equivalent of my welcoming lobby to a webinar or conference is the registration page. Have you taken a good look at your registration page? The way organizations and events design their registration screen reflects their view of the attendees. I filled out quite a few registration pages in the last two years and have come to dread a simple phrase: “All Fields Required.”

“Please list your terminal degree. Please list your medical facility. What is your position in your organization? How many beds are in your hospital?” As I stare at the blinking cursor, I wonder if they even want me here. Where are the questions for patients?

And try as I might to make my high school diploma and patient experience fit within the field for terminal degrees, I cannot. I must give up and contact the conference or webinar and beg for a manual entry.

It seems as if the event organizers are saying: “Yes, you can be part of our event but patients must enter through the back door. “

Time and time again, I have heard organization say they want to include patients, they want to address disparities, but yet what has been done to include us as an intrinsic part of the process?

When I am in a meeting, be it a webinar or a physical conference, I am there as a patient activist. I may be tweeting, blogging or painting, but I am there to fulfill the honorable duty of representing the individual patient voice. I will ask the hard questions, I will make myself the fool, if only to voice the concerns of those countless ones who suffer beside me. I have neither an organization to represent nor clinical job title that could interfere with my singular purpose of voicing the patient view within the healthcare discussion.

And I am angry.

I am frustrated that my compatriots and I beg to attend conferences and events when we should already be included on the master list. Often we are invited as only an afterthought. If we truly wish to see patient-centric care in this nation patients must be included in the design phase and not as part of the epilogue.

I will take the phrase of the establishment and twist to include a new meaning. If we are to change healthcare, then indeed “All Fields Required!”

I want to see artists and poets, mechanics and clerks at conferences. I want them to stand before the crowd as the patients they are and bring the voice of truth and pain. I want to see a board of directors with a single mother that is caring for a sick child. I want to see ivory towers leveled and those precious white stones used to pave a path for the sick, injured and suffering.

Indeed, I demand you use that phrase to plant seeds. There is not a patient among us who could not be a fertile bed for ideas and solutions to the current problems in health care. Leave no field fallow within this debate. You want to create measures that track adverse events and medical errors? Involve the patient. Ask Trisha Torrey who would have caught her diagnosis before Chemotherapy; no one caught it but her. Ask Alicia Cole who realized the spot on her flesh wash not a black dot of a sharpie marker, but instead the threat of imminent death. She would tell you it was her mother who saved her life.

Friday, January 13, 2012

Kevin Adomayakpor stood beside me as I painted at mHealth 2011 in Washington DC. He had been a speaker the day before and Christine Kraft had heard his speech: The Intersection of Mobile Health and Public Health – Towards Greater Understanding and Collaboration. Christine was so impressed that she brought him over to my easel after his performance. He told me about the work he was doing with OneWorld’s “Learning about Living Project.” He was helping youths in Senegal to be empowered in their sexual health using the tools of mobile technology. Questions that could not be easily asked to the adults could be answered in a non-judgmental way by the computer or cell phone.

Kevin was far from his home of Senegal. He could not just run home and hand me a spare jacket in order to join the gallery. He handed me his other jacket and told me about his journey. He told me quite a bit about the youth of Senegal. He told me about the HIV rate and the misinformation that many young people learn from their peers. He told about the hope for a better future through mobile technology.

I painted this for Kevin: “A Light Shining in the Darkness.”

In this painting, a young woman looks up with uncertainty within a darkened room. She is preparing to text a personal question. Her face is filled with worry. It is hard to talk about this subject and if it were not for a service like “Learning about Living Project” she would have nowhere to turn.

The room is darkened, but there is one light above and to the right of the young woman. People might think it is a window. But this is a silhouette of a phone that shines as brightly as a sun. It can light her path. It can give her hope.

Like many people today, my smart phone has become a central part of my life. It is my alarm clock, my calendar, my camera, my calculator and it even lights my path at night. But imagine what the phone is to this young girl from Senegal.

It is the difference between life and death.

This was the last jacket I painted at mHealth 2011. I could think of no better way to end the day. This is what mobile health is all about.

Wednesday, January 11, 2012

When I was a little girl I would stare for hours at the wooden clock upon the wall. I found it quite intriguing. The clock was a little house with a bird that would dip its beak outside its window and cuckoo upon the hour. A little wooden boy and a little wooden girl would meet in front of their doors and share a kiss and then depart. The clock seemed magical and full of hope. The sun would always rise, the birds would always tweet and the girl and boy would always kiss.

But life is not like wood-work clocks with metal pinecone counterweights. Life is unpredictable and sometimes you wake up to find the time piece is still ticking but the boy is lost forever.

And that is how Chiara Bell found me, a lonely widow with a broken heart that refused to stop ticking. She found me with a tweet, asking for a jacket painting like the paintings Jen McCabe wore. I painted her “Caregiver’s Clock.” I painted soul crushing pain upon her back. Here was a clock with no hands to sooth you.

Time passed and Chiara tweeted. I saw her walk away from her first company in order to build a second. She told me the new company would be called Careticker. She wanted to create a company that would make it easier for patients to plan discharge transitions and would allow active communication between the care team and approved family members via text messaging. She asked me to paint once again and I was inspired by the name of her new concept. I asked her, “What do you know about the origin of the ticker tape machine?”

The ticker tape machine was the first digital electronic communication technology to be used in the home. It utilized paper and telegraph lines to print out stock quotes, and like an erratic clock, it ticked; hence, the name ticker tape. It revolutionized trading, for suddenly, one did not need to be on the trading floor to make decisions in a close to real-time fashion.

So I painted this canvas for Chiara. In the background, spool upon spool of ticker tape cascades. To the far left, a family vignette includes a wealthy mother, loving daughter and family nurse as they quietly read the stock quotes spooling amongst them. To the far right, a modern mother rests in the comfort of her home with her little son beside her. She is reading a text from the hospital as a nurse responds via Careticker. A large image of a smart phone unites the two scenes with streaming texts on the care condition of the patient.

A few months later Chiara came to DC to attend the mHealth Summit. I asked her if I could share her booth space. Chiara was presenting in the start-up pavilion and Greg R. Itzenson from our host StartUp Health, offered me my own space beside Chiara. So that is how I came to represent and the Walking Gallery and paint on site at the m-Health Summit.

Over three days I painted five jackets. One of the jackets was for Chiara Bell. It is called Careticker and it is a happy jacket. Here the clock of my childhood is transformed. The background roils with spool upon spool of tape. To the left is the red-hued past filled with a lack of data access, to the right is a blue serene future.

Centered is the clock. Its pendulum swings back and forth, as we totter to the future while lapsing into the past. The classic cuckoo door is wide open and the bird has been replaced with a triumphant patient. Center on the clock face is a smart phone. Here is communication in real-time. Here is a new world of care.

So Chira Bell has two jacket paintings focused on time: the pain of time that has stopped and the joyous flight of time when we are with our loves. That is just and that is right. For I know the origin of the word “clock” it hails from the Celtic “clagen” meaning “bell.” If there is anyone I would trust to ring the bell, either in peals of rejoicing or tolls of warning, it is Chiara Bell.

Tuesday, January 10, 2012

If you do not count sci-fi geeks and cosplay fans among your very best friends, you may not know about this literary/fashion sub-genre. The steampunk aesthetic arouse from science fiction novels of the late1980’s to early 1990’s. A hallmark of the form is an intermixing of Victorian era technology with a futuristic world. In the world of steampunk, giant floating airships replace airplanes and robots powered by steam can be wound up like clocks. That explains the steam part of the moniker. But along with the futuristic Victorian technology, there is grimy coal-stack poverty within the form. In steam punk fashion, the make do, miss-match dichotomy of distressed smart phones with clock work gears gives one a sense of unease. There is something really wrong with the picture when antiquated forms are indiscriminately matched with modern technology, hence the term is steampunk.

What is Steampunk Health?

Well, that is the title of Ben Merrion’s Walking Gallery Jacket and anyone who looks around the world of health today will see futuristic technology surrounded by anachronistic systems of old-fashioned medicine. Ben Merrion is the Literacy Outreach Specialist for DC Public Library. He has extensive experience as a teacher of adult learners and very involved in social justice in DC. He is even one of the artist members of The Walking gallery having painted the sumi-e style “Holistic Medicine” for Christian Liu.

But this is Ben’s jacket and he wanted to focus on adult literacy and steampunk Daleks. Now some of you might wonder what health advocacy has in common with adult literacy or steampunk Daleks. Well as e-Patient Dave de Bronkart recently tweeted, I am good at pointing out connections and will show you the way.

In this painting, Ben Merrion is dressed in a steampunk fashion. He wears glasses that are affixed with mechanical trifocals. With a concerned countenance, he holds out his hand containing a jar of prescription medicine. The label can be clearly read… if you can read. It states: “1 in 5 District residents can’t read this.” That is a pretty powerful statistic if you apply it to health literacy. How can a patient be medically complaint, if they cannot read their care instructions or warnings about possible side-effects?

Behind Ben, a line of steampunk Cybermen stretch into the distance. Above these cyber figures is the statement: “Uncooperative patients will be assimilated.” If you know your Doctor Who you are very familiar with these cyborgs that vanquish all human emotion and replace it with cold hard logic. If you look closely you will see that upon each cyberman breast plate a there is a FICO logo next to a small capsule. This image harkens back to an epatient.net blog and discussion from the summer.

In June Alex Albin’s post “FICO’s new Med Compliance Score: #FAIL” was cross posted on epatient.net. The blog post explained FICO’s decision to track patient medical adherence via third party data sources. FICO was planning to use a combination of retail purchase history, geo-credit profiles and income wealth indicators to compile a data base that could be used as a tool to judge patients. With this tool providers and pharmaceutical companies could easily tell which patients were prone toward non-compliance.

Yes, the tool could tell you who might be non-compliant and give providers the data needed to guarantee a pool of adherent, assimilated patients. But it could not tell you why they were not taking their medication.

Toward the lower half of the painting is a steampunk Dalek. Dalek’s are also cyborgs and are an arch-nemesis from Doctor Who. They have had every emotion removed except hate. Their pepper-pot form and catch phrase, “Seek, Locate, Exterminate!” permeates pop-culture. The traditional catch phrase has been replaced in this painting by: “Seek, Locate, Medicate” and alludes to a statistic from May 2011 in the Wall Street Journal. 1 in 4 children are on chronic prescription medication in the United States.

So, let me clue you into a few things. The number one blogging key word search term for patients is uncooperative. If you attend medical conferences you will repeatedly hear we are non-compliant. If you listen to specialist like Ben, a large portion of the adult population in this city cannot read at all, let alone complex instructions. And if one in four children is prescribed chronic medication, we aren’t dealing with a compliance problem; we are facing a massive level of over-medication.

So, I think Ben has one of the most appropriate jackets in the Gallery. I really hope he wears it everywhere; for I am steamed about these statistics. And as far as a punk is concerned, I know from years of selling fireworks what a punk is for.

Sunday, January 8, 2012

You might know her as @Cascadia on Twitter and see that her tweets cascade in a continuous stream of warning. You might know of her from her time with Group Health and judge her by the values of that organization. You might know her as that questioning voice on a web conference call stridently defending patients, and picture her within your mind as an avenging hero with sword in hand. You might have seen her comments and questions posed to the Society for Participatory Medicine list serve. Her intellect and wit is quite apparent as her comments appear on topics ranging from emergency room design to the Open Notes project supported by the Robert Wood Johnson Foundation.

Or you might see Sherry and think of Lilith.

Do you know of Lilith (Adam’s first wife)? In Judaic mythology Lilith is the one Adam casts away. Lilith questioned, Lilith refused to be subservient and was cast out from the Garden of Eden. That sounds a bit like the Cascadia I know.

This is “DEStiny” a Walking Gallery jacket for Sherry Reynolds.

Sherry/Lilith is the center of this piece. Her right eye is large and all seeing, magnified by the glass before it. She is here to observe the story as it unfolds and through her questions act upon the scene.

In October, I saw this tweet from Sherry.

When I clicked upon the link I watched a story unfold describing the horrible side effects of the drug DES (diethylstilbestrol).

In the 1970's Sherry was only 12 years old, the medical community discovered the disastrous result of fetal exposure to DES. This drug had been commonly prescribed to help maintain pregnancies. Young girls were being diagnosed with a rare vaginal cancer that had never been described in youths. Traditionally, onset of this rare disease occurred in women over the age of 60.

A diligent mother of one of these girls asked the question that led to a flurry of research. She told her daughter’s doctor she had taken DES during pregnancy and asked if there could be a correlation. This alert physician immediately interviewed the other mothers.

They had all taken DES.

Dr. Robert Hoover, director of National Cancer Institute Epidemiology and Biostatistics Program, was very involved in the study of DES and explains the sad ramifications of the millions of prescriptions of DES. DES was discovered in 1938 and was the first synthetic estrogen. It was prescribed shortly thereafter to combat complications of pregnancy. According to Dr. Hoover, in the early 1950’s, there were four clinical trials done to determine the efficacy of DES in preventing complications of pregnancy. It was determined that DES did not prevent adverse outcomes in pregnancy. Unfortunately, while the use started to decline, it was not stopped.

In the early 1970’s studies began tracking the adverse effects of DES on the mothers and their children. In 1971 the US government ordered doctors to stop prescribing DES.

The discontinue use recommendation occurred 20 years after DES was proven ineffective in clinical trials. Sadly, the product continued to be sold for another decade in Europe.

In the late 1980’s-through early 1990’s, Dr. Hoover approached the authors of the prior studies. They agreed to put the data together to form a large study compiling all the adverse outcomes that became the paper: “Adverse Health Outcomes in Women Exposed to Diethylstilbestrol.” It contained relative risks and cumulative risks.

Dr. Hoover pointed out one of the most important lesson of the study: Do not prescribe a drug that has not been proven to be effective, especially not in pregnancy.

Oh, but how we have paid for this lesson. It is estimated that over 4 million American’s were exposed to this drug while in the womb. Many of the daughters are infertile, and/or have rare cancers. Many of the sons have testicular cysts. The grand-daughters are reporting late on-set of menstruation.

But one of the saddest elements of this tale is Dr. Hoover’s comment that when he enters a class to quiz medical students about their knowledge of DES, no one raises a hand to answer his questions.

So this is why we need our Lilith’s and our Sherry’s. We must ask questions, look for answers and find scientifically supported results. Sherry is not the kind of gal who eats the apple without question.
And I cannot see her open her mouth in obedience while a doctor pours an unproven concoction down her throat. Sherry makes the establishment uncomfortable.

She has seen so much through the magnifying glass of experience. She was a volunteer firefighter and paramedic during college. She worked within the AIDS community at the height of the disease and watched so many friends die. She has worked in Health IT for many years and frequently volunteers her time to advocate for patient and consumer rights.

She does all of this as a cast away. She helps create advocacy positions that others fill. She advocates for better health outcomes for our country’s children whilst having no children of her own.

Can you imagine the bravery of Sherry? She is the one who speaks of things not spoken of. She is the one who labors all alone to tell us about DES and so many other tragic things. She is the lonely oracle of the mountain, the center of the heart tree, and what she tells us may be hard to hear, but she tells us all the same.

Friday, January 6, 2012

I bet you will never guess my favorite literary genre. Here is a hint: Siobhan Champ-Blackwell’s Walking Gallery jacket- “In Case of Emergency.”

Yep, that’s right, I love post-apocalyptic fiction.

I have read all the classics: Earth Abides, On the Beach, Alas Babylon, Lucifer’s Hammer, The Postman, The Last Ship, A Gift Upon the Shore, Malevil and of course Stephen King’s The Stand and The Dark Tower Series. I especially enjoy children’s post-apocalyptic literature. I have read all I could find of that wonderful sub-genre. My childhood was blessed with titles such as Z for Zachariah; Children of the Dust and the terrifying picture book by Raymond Briggs entitled When the Wind Blows. Currently, we are living through a renaissance of sorts in children’s literature that describes the world after catastrophe. Books such as The Hunger Games by Suzanne Collins and The City of Ember by Jean DuPrau have attained best-seller status.

I am glad that such books are available. They taught me a very important life lesson: no matter how bad it gets, some people survive and they must never give up. As a patient advocate and the caregiver of the dying this has been a mantra I live by.

When I heard Siobhan wanted to join the Walking Gallery I decided to paint disaster upon her back. Siobhan recently moved to DC after joining Aquilent in September 2011. She had been working in Nebraska and has over 13 years of experience in library and information science. Her job at Aquilent focuses on disaster health information goals of the Disaster Information Management Research Center at the National Library of Medicine and for the Bethesda Hospital’s Emergency Preparedness Partnership.

So upon Siobhan’s back I painted an androgynous figure bathed in flames, to the figure’s left tornadoes spiral in the distance. To the right a mushroom cloud forms. The torso of this figure is a turtle’s shell. It reminds me of “See the Turtle of enormous girth, on his shell he holds the earth,” from Stephen King’s The Dark Tower. This figure holds our hope of survival in his hands.

It is a book. The book functions as a life raft. The book is open and the title can be easily read: “In case of emergency.” But I worry so for the patient who stands upon the page. She is trying to row with a blind-fold on whilst all the life preservers float away within the rushing flood. To her left a baby is trying to crawl off the raft unseen by our blinded patient.

I cannot help but think this book was opened far too late and I worry so for the figures on the raft.

Siobhan is one of those amazing people who help create plans to overcome disaster and helps disseminate that information to us all.

She did exactly that when she spoke before my Cub Scout troop in November. She stood before first through fifth grade boys and spoke of fire, tornadoes and floods. She spoke before children wearing this jacket and inspired them all. She knows something I knew as a child, children are resilient, natural survivors if we only let them open the book and learn what to do in case of emergency.

Thursday, January 5, 2012

I think I shall blame that phobia on Stephen King, as I read Firestarter at a very impressionable age. There were many visually terrifying scenes within that book, but I think death by garbage disposal was the most gruesome.

How does one die via garbage disposal? Well, in Stephen King’s work, one of the main characters in the book has a little telepathic ability he calls “the push.” He can push other people within their mind to do things or see that which he wishes them to see. Unfortunately, the poor recipients of “the push” often develop an echo that becomes a ricocheting thought. That ricocheting thought then begins to tear up the poor victim’s mind. The pressure and confusion becomes so bad that death by garbage disposal seems like a good option.

The first time I lived in a home with a garbage disposal was at my Aunt Hilda’s house as a young child. I found the bright yellow enameled sink with its dark steel maw a disturbing juxtaposition. But this dichotomy existed in a happy house, and I could ignore my fears. After all, Aunt Hilda would just laugh and cook and rarely turn the disposal on. Almost every summer of my life I have visited Aunt Hilda’s house. But theses last few years Aunt Hilda had not been there, instead my mother has been staying in the pretty yellow house.

Aunt Hilda had been living in a nursing home as Alzheimer’s destroyed her mind, just as assuredly as a garbage disposal destroyed the contents of its darkened chamber.

I visited her only once this summer whilst in town, and that visit only lasted minutes. Aunt Hilda was methodically chewing food spooned into her mouth by her loving sister Aunt Minnie. She hadn’t spoken in years. But she could still remember how to swallow.

I left her in the nursing home and went back to her house stared into the maw of the garbage disposal.

Then I began to paint Mary Anne Sterling’s Jacket: “Washed Away.”

Do you know Mary Anne? She is the CEO of Sterling Health IT and was the 2010/2011 HIMSS Institute for e-Health Policy Executive in Residence. I have seen Mary Anne at many health IT events in DC over the past two years. She is usually the quiet one in many discussions, biding her time and then surprising us all with her astute analysis and eloquent delivery.

Her dedication to creating a better healthcare system is very personal. She watched her father die a long slow death from Alzheimer’s.

She began caring for her parents while in her twenties. Her father began to suffer the first signs of dementia in his early 70’s. So began their hellish family odyssey. The years and years of care dragged on. The family liquidated all assets to provide care for the father. Twenty years passed by in decline as his ailing wife tried to care for her dying husband. Time passed and Mary Anne’s father had no idea that this beautiful young woman was his daughter. And still her father fell deeper and deeper into darkness. He was placed in a nursing home on Medicaid while Mary Anne struggled to support herself and her aging mother.

Mary Anne struggles so, and thus I painted her. One hand reaches out bravely trying to hold her father’s hand before he is washed away, before he is torn to shreds by a disease as unforgiving as a steel in-sink-erator. She fails in her endeavor and her father dies in 2001, at the age of 95.

In her other hand she holds her mother upon the ledge. She is supporting her physically, emotionally and financially. Her mother looks upon the scene with confusion as mild cognitive impairment has begun to cloud her mind.

Behind and above this scene of tragedy is a window. It is a beautiful summer day and only glass separates these figures from the bright sun and soft breeze. Only glass as hard and restraining as steel separates those stuck within a nursing home bed from the freeing breezes of a summer day.

I painted this in my Aunt Hilda’s kitchen in Oklahoma. A little over a month after I painted this, Aunt Hilda died. I am glad Mary Anne has worn this jacket to events this past fall. As she wears it, the story of her father lives on and so in part does my Aunt Hilda.

Tuesday, January 3, 2012

Sometimes the most beautiful art swells from the most incredible pain.

I have created art since I was very small. I have cherished the blended line of graphite. I have felt my spirit soar as a swirl of pigment creates a fiery plume within a wet wash of watercolor. I have felt the ache within my shoulders and my fingers as I methodically prick the page and a profile appears.

Do you remember the art of the pinprick? I remember my second grade classroom in Oklahoma. I remember the children with their backs hunched over sheets of paper. Silence reigned within the room as we pressed stickpins upon the page again and again creating profiles. It was February. The room was cold. This was the month for gloves and the paper arts. This was the month of elaborate cards with hearts and loves and lace. This was the month for the faces of presidents.

So each child hunched over a pinprick Washington or Lincoln. Every once in a while a child would lift their sheet then facing the light, a half-finished silhouette of a great man would dance within sunlit dots upon the wall.

The art of the pinprick was painful. It took hours to complete. It was silent and repetitive. This was the holdover art of the Victorian era: a useful skill for a child to learn in preparation for years of labor before a mechanical loom or automotive assembly line. I do not see children create such art in the times we live within. Our lives are lived at such a frantic pace. We create a profile with minutes and place it upon our Facebook page. We do not spend hours pricking a face out of a blank expanse of paper to create a creature of light. We create pixilated avatars and send our electronic likeness through the cloud and within moments span the world.

But some profiles are made over the span of years.

This is Teresa Younkin’s jacket for the Walking Gallery: “Profiles.” I painted it within a few hours and it tells the tale of years won and loves lost. I love profiles. I love the stark silhouette upon the page. So much can be said within outline.

Teresa’s profile reaches up to the profile of her husband David. Ten years ago theirs was a happy family. They lived in Portland, Oregon with their three children who were seven, four and one-years old. They were so happy. Then the diagnosis came. David had primary brain cancer. But David was a veteran and the VA was using a new EHR system called VISTA. The system was new and David was so young. Every attempt was made to help the young couple.

As David and Teresa raced across the country for treatment, David’s data raced before them through VISTA. Their way was prepared long before David saw even saw his doctor. Information transfers that would have taken weeks were accomplished in days. When time was of the essence, David was treated with great speed and efficiency due to VISTA. Teresa still had to hand carry David’s military record and his second opinion records, but the reams of imaging results and other data transferred to and was read by the three doctors coordinating David’s care.

David tried so hard to live.

He had lost his own mother at six to breast cancer. He had so few memories of her. He was determined to live and love. He would create as many memories as he could for his children. David received cutting edge treatment. The entire family relocated to east coast to be closer to his doctors.

David beat the odds. He lived for six years past diagnosis. Six years of birthday parties, and hugs and memories. He saw his youngest child Faith turn six and would reach his 36th birthday. Then he died on June 6, 2006. 6,6,6,6,6 and the sixes spin on and on within this painting like yarn spinning toward the wheel. For this is a profile and profile comes from Latin: “pro” meaning forward and “filare” means to spin. Some may view an ever-spinning series of sixes with trepidation, but not Teresa. She views them with hope. Three sixes make 18 and in Hebrew that number is the number of life.

And for many a jacket, that would be the end of the tale, but not this yarn. It still unspools. In 2008, Teresa met Jim Younkin online. They met as profiles, electronic people connected by backlit pixilated dots. They talked data and HIT (Health Information Technology), for Jim worked at Geisinger Health System. Only then did Teresa realize the gift that VISTA provided. Only then did she realize how many wives lose their David’s and break their hearts in a world without easy access to and transfer of patient data.

One year after meeting Jim online, Teresa and Jim married. Teresa has a new love tempered by her first. Teresa loves Jim and she also loves HIT. She will do everything she can to spread the word to others. HIT saves lives and helps create memories. Teresa even joined SpeakerLink.org and you can find her profile among all the other powerful patient/provider speakers.

I will never forget Teresa. Her story sears my mind. And as I paint, I wear the ring she made for me. Teresa is a jewelry artist, when not working with HIT. She made this ring. She hunched her shoulders and spooled this wire for me to create a ring much like the one she wears.

Teresa describes the ring: “The stone has deep red sections that sparkle fiery orange flecks of color. I chose this stone for you because it signifies the two things that define your journey right now. If you move the stone around you will see the color orange, the color of kidney cancer. But the orange is not the primary color. The red represents the passion that you have for patient access to medical records. Without the flecks of orange this would be a pretty red stone. Both pieces work in unison to provide a beautiful amalgamation of your experience. The faceted surface represents the changes and experiences that make up your journey. The experience of death is not just one sided, it causes us to experience life in a whole new way.

The stone sits above the silver rings that make up the shank of the ring. On each side of the stone are short columns of silver. These short columns signify the strength it takes to live this life. Neither one of us ever imagined our lives would turn out like it has; face it nobody does. It is what we do with these experiences that help us to carry on. Each column supports the weight of the stone and lifts it to a higher plane.

Living through the death of a loved one does that. You begin to see life on a different plane. Gone are the days of the petty annoyances and inconsequential details. There is a mission in life and the weight of the responsibility can be overwhelming sometimes. You are strong and you continue to protect the foundation of love and continue to honor the life you and Fred started to build for your boys.

The wire that comprises the shaft and the holds the wire together is made of sterling silver. When you start working with the silver wire, it is pretty malleable. Once I have assembled the ring, I put it on a mandrill and bang away until the ring is shaped in a perfect circle. The neat thing about the wire is that the more you work with it the stiffer it becomes. So as I pound on the wire while I am shaping it, it becomes stronger and stronger. It becomes so strong it will hold its shape and not bend. It describes this experience. With each hit, you became stronger and stronger and now you are a source of strength for others.

I wear my ring together with a second ring that I had made while I was in Israel. My ring is gray-the color of brain cancer. The second ring has Jeremiah 29:11 engraved in Hebrew the ring. I wanted the true Hebrew translation to be put on it, which says: I knew in My mind My thoughts about you before you were you. I wear both of these rings on my right hand…because God has held me up with His mighty right hand. Together these rings help me to remember that this journey is not just about me, it is about what God has for me. I am His child.

I am glad our paths have crossed. Life is a tapestry and every experience is a thread that is woven together to make a beautiful masterpiece.”

Thank you Teresa. I am glad to spin with you, to feel the prick of the pin, and to hunch over our labors as the tides of years pass. We shall help create a world in which the Fred’s get the same treatment as the David’s and the children’s memories shall fill with birthday parties, happiness and hugs.

The Walking Gallery Mini Doc

About Me

Regina Holliday is a resident of Grantsville, Maryland. She serves on the board of the local non-profit The Highland Thrift Shop. She is a member of the Grantsville Rotary Club. She is also Asst. Cubmaster of Pack 460 Cub Scouts.

In addition, Regina serves as a parent advisor to the Garrett County School Board Health Advisory Committee. She is also a member of the Garrett County Chamber of Commerce and The Garrett County Arts Council.

Ms. Holliday is an activist, artist, speaker and author. You might see her at a health conference painting the content she hears from the patient view. She is part the movement known as participatory medicine. She and others in this movement believe that the patient is a partner with their provider and both should work together as a team.

Regina is a mother and a widow; she speaks about the benefits of health information technology and timely data access for patients due to her family loss. In 2009, she painted a series of murals depicting the need for clarity and transparency in medical records. This advocacy mission was inspired by her late husband Frederick Allen Holliday II and his struggle to get appropriate care during 11 weeks of continuous hospitalization at 5 facilities. Her paintings became part of the national debate on health care reform and helped guide public policy.

She also began an advocacy movement called “The Walking Gallery.” The Gallery consists of medical providers and advocates who wear patient story paintings on the backs of business suits. Paint and patients, pills and policy all come together within The Walking Gallery of Healthcare. This "walking wall" of 330+ individuals who wear personal patient narrative paintings on their backs is changing minds and opening hearts. They are attending medical conferences where often there isn’t a patient speaker on the dais or in the audience. They are providing a patient voice, and by doing so, are changing the conversation.

She published a book with the Health Informatics Society of Australia (HISA) entitled: "The Walking Wall: 73 Cents to the Walking Gallery."